About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, January 31, 2014

It's been an interesting week, as if I'm not having enough "fun", my heart decided to take my body for an unexpected "joy ride", resulting in me requiring a "Holter
Test". For those of you unfamiliar with this medical test, it monitors the
heart's activity, generally over a 24 hour period. Small patches were stuck onto my chest which connected to electrodes. The wires are
attached to a small battery operated recording monitor (the size of a pack of
playing cards) and was hooked onto my waistband. It's helpful to the doctor if one writes down any
strange palpitations or symptoms along with the time of day they occurred and
what activity one was doing, as this can then be compared with the read-out from
the monitor's recording. Wearing the Holter was no big deal, but when my
husband asked if I'd like to go out for coffee (knowing I hadn't been out all
week) I reluctantly declined. The wires kept on hanging down below my shirt,
and no matter how I tried to tuck them inside my clothing they were very
conspicuous making my not so slim figure even more bumpy and oddly shaped than
normal. I felt like some sort of science project gone
wrong, apart from that, YESI would loved to havegone out.

How infuriating is
it when your car makes a funny sound; you take it to the garage, yet once there,
miraculously the noise disappears. You leave the garage puzzled, only to be
driven mad by the returning mysterious noise on your way home. I'm normally a
very positive thinker, but on this occasion, I was convinced during the 24
hours wearing the Holter, my heart would beat regularly, no palpitations or chest
pains would occur, which had prompted the doctors to perform this test in the first
place.

Mid afternoon,
laying in bed resting, all of a sudden the whole episode I'd been complaining
about, began. I've never before been so pleased to be in pain! Unlike my car with the odd knocking noise that
was never discovered at the garage, my heart kindly obliged and the
palpitations began along with a sharp pain down my arm. "Great" I
thought, finally captured on a monitor! As if this wasn't proof enough, I was
also awoken at 01:00 with yet another episode, and although would normally find
it highly disturbing, I was relieved there would be a second incident recorded.

When suffering from a serious
disease, it's very easy to attribute any new symptoms to that illness,
overlooking the fact there may be something new and unconnected going on. Never
dismiss or make light of new symptoms. Make sure you write them down and report
to your doctor as soon as possible. One normally associates heart attacks with the
male gender, but the number of women who suffer heart attacks is far higher
than you would imagine. Thankfully I did not have a heart attack, but will have
to wait for the results to find out what is happening. Trust your instincts, you know your body better than anyone. If you feel something is wrong, don't let it slide.I have had great difficulty in writing recently, for my condition became worse over the last few days, making it physically difficult to type, and I hope you'll not judge my article this week too harshly for it was written in extremely hard circumstances. Anyone suffering Parkinson's or who has had experience with this disease, I am sure will understand the great effort it took to write, what to others may appear a simple article. "Parkinson's waits for no man" is the title of my latest article in The Huffington Post if you'd like to take a look. Enjoy your weekend and I'll be here come rain or shine once again next Friday.

Friday, January 24, 2014

Making the most
of each day and enjoying every moment to the fullest is how I try to live my
life. I hadn't realised however till recently how my campaign to offer support
to fellow sufferers and create further awareness was starting to have a
detrimental effect upon my health. For anyone with Pakinson's to sit for hours
hunched over a keyboard writing non-stop, although gave my days purpose and
making contact with others around the world in similar circumstances was
rewarding from both sides, it was beginning to sap my strength. Having
Parkinson's, sitting in a bad stooped over position for so long each day, is
not conducive to one's wellbeing, and I found I was literally crushing my lungs
and heart, leaving me breathless.

You know when
you've made a good decision, when you feel a sense of calm and peace in your
heart, your inner voice telling you it's the right move. No one could have told
me to slow down and cut back the hours I have been dedicating to my campaign,
for some things have to come at their own time, and from within. Those who know
me personally, including my doctors, are relieved I finally came to this decision
for they could see the deterioration over the last year, and knew I was taking
on too much. Whether I have caused the recent deterioration by my over zealous
nature, or if my decline in health is simply a natural progression of the disease,
I guess we'll never know. Now I have to focus on "me", a most
unfamiliar scenario, for my attention has always been first and foremost to my
husband and daughter.

Keeping a happy
medium between fighting a disease, being pro-active and doing as much as one
can to help others and yourself, whilst not endangering your own health is a
very fine line to walk, or in my case "shuffle"! I have been walking
that line for a few years now, but somewhere along this path I must have
strayed a little too far. So now back on track, my aim is to ensure I am as
well as I possibly can be. My neurologist has tweaked my PD medications and
hopefully this will make a difference.
As anyone with Parkinson's will tell you, it’s a constant trial and
error with changes in pills, dosages, and even times of the day when
medications should be taken. A lot of patience is required until the optimum
regime is reached.

My latest article on The Huffington Post can be read on-line: "Parkinson's Keeps On Taking". Friday is my
favourite day of the week for it indicates the beginning of the weekend, so I
will leave you here and wish you well. As they used to say on the BBC,
"Tune in same time, same station, next week!" and I'll be here.

Friday, January 17, 2014

It's Friday once again, and here I am sitting back at the computer. I hope you've had a good week, and that you are in good spirits.My
husband and I celebrated our silver wedding anniversary last week and I was
determined to make it the most wonderful memorable day. Having realised my
limitations due to Parkinson's we couldn't have the big party we had talked
about and planned years ago. Instead we had to settle and be content with
having just the immediate family over. An evening party was out of the
question, for come 7 pm., or 8pm. if I'm lucky, I'm already running out of
steam. Suffering extreme fatigue is a real dampener on any kind of social life; as soon as the sun goes down I'm finished for the day, leaving my husband frustratingly limited. This must be a common problem that many couples have, where the sufferer is already winding down from the day and has no energy left, but the caregiver, finished with work and chores is ready for some social interaction and relief from Parkinson duties. Taking my present situation into consideration, we decided
to make a brunch, as the morning hours are when I'm at my best.

I
awoke that morningwith great resolve, using every ounce of
energy, I told Parkinson's to take a hike for the day so I could enjoy our
anniversary I had looked forward to for such a long time. I had gone to great
lengths with
a lot of thought to come up with some original and special ideas to surprise
my husband. A big thank you to various friends who acted as my accomplice.

I
think in certain circumstances, its mind over matter - and nothing was going to
stand in my way of having a good time that particular day. I got dressed, and came out of the
bedroom with my head held high, consciously standing up straight for a change, instead of
my usual stance, hunched over with bad posture. I don't know what I was running
on; adrenaline, excitement or sheer strength of determination not to allow
Parkinson's to spoil our special day. My husband was astonished and got to
see the "old Elaine" again, who he married 25 years ago, even if only
for a few hours while with great willpower I defiantly kept Parkinson's under
wraps.I
managed to keep going for a number of hours, but eventually around 3 pm. I
could continue the battle no longer and started to wilt.

Once
all the guests had left, much like the Energizer bunny whose batteries are
suddenly removed, and is unable to function, I collapsed into bed as fatigue resumed and Parkinson's
returned with full vengeance.I had let my guard down for a mere moment and Parkinson's
jumped back in and hit with force, leaving me powerless. I was so exhausted by
the afternoon, it took a few days to get back to myself. However all the effort
was worthwhile, as I still came out a winner for I had spent a whole morning celebrating with
my husband and close family members, resulting in precious memories I can hold onto that
Parkinson's can never steal from me. Even the photographs taken that day verify there is evidence to support "mind over matter", even though only for a short period of time.I have written a light hearted article for The Huffington Post this week, so take a few moments to read "How Are You". Have an enjoyable weekend, and I'll catch up with you next Friday.

Friday, January 10, 2014

The week has flown by and a
most eventful and busy one; a great way to start a new year. I knew I had been
over doing things, pushing myself to the limits, but until I made the decision
to stop blogging on a daily basis, and write just once a week on a Friday, I
hadn't realised how much this computer had begun to rule my life. My typing has
become very slow due to lack of dexterity in my fingers and was taking precious
time away from me, when I should have been doing various exercises to keep me
mobile and in the best shape possible, (Parkinson allowing!) and spending more
time with my loved ones. Sometimes it takes a "wake up call" to make
us stop, take a step back and reassess the situation. I am feeling much better,
less stressed, and have managed to get into some sort of routine regarding Yoga
breathing exercises, voice therapy, physical therapy and walking with Nordic
poles. All this activity takes time and requires a conscious effort to include it
as part of one's daily routine.Life
is unpredictable, a journey along which we hope to grow wiser and gain from
experiences. Falling in love is not in our control, maybe fate brings us
together, and this was our destiny all along. Having been married for 25 years
now, not a day goes by that I don’t appreciate how lucky I am to have found my
soul mate. He is indeed my silver lining! Almost joined at the hip, we are a perfect match,
each bringing our own strengths and weaknesses to a marriage; together we make a good team. When
we married, little did we know that Parkinson's would be joining us further
down the road (who thinks of these things when young and in love?). Two is company, but add Parkinson's and three becomes a crowd! However
we have learnt to manage and our sense of humour gets us through the rough
days, and we laugh and make the most of the days that are good.

Fortunately
we both have positive outlooks on life and are young in spirit, and remain
hopeful, which is a huge bonus. I would not have made it this far and achieved all I have done in
being an advocate for Gaucher and Parkinson's had it not been for my dear
husband by my side. His devotion, love, support and patience have been endless. No words could express sufficiently
the deep love and gratitude I feel for everything he
does in taking care of me.

One
of my favourite songs by the British singer, Katie Melua, says it all. I wish I
had a pretty voice like Katie's for I would love to sing this song, but I'll
spare my husband's hearing, and let him listen to the original. This is for you
my darling who brings a smile to my face, warms my heart and holds my undying
love forever; "If You Were A Sail Boat".Writing weekly for the Life Style Section U.K. on The Huffington Post, my article this week is entitled "Mirror Mirror On The Wall". I wish you all a very good weekend.

Friday, January 3, 2014

Having
consistently blogged every day for two and a half years, it feels awfully
strange, not being tied to this computer night and day. Making the decision to
blog once a week on a Friday has given me more time to concentrate on taking
care of myself. Any sort of exercise or physical activity, as any Parkinson's patient
can attest, is vital in maintaining one's range of movement and mobility and
slows down the progression of the disease. Along with spending more time with
my family which is priceless, I have made drastic changes to my priority list.

It's
Friday and I'm here, just where I said I would be, touching base with you. I
hope you enjoyed your New Year's celebrations wherever you may be. We were
invited to a party which I know was a huge success, a lot of fun and great
food, but regrettably had to decline the invitation, realising it would all be
just too much for me and I'd never make it till midnight. These dear friends
who always put such thought and preparation into their marvellous parties,
understood after I explained why we wouldn’t be going. Instead we stayed home,
and I barely made it to 10:00 p.m. - how pathetic is that? Even Cinderella made
it to midnight, dancing in the arms of Prince Charming, but she had a little
magic help and a pair of glass slippers (which sound most uncomfortable, I'll
happily stick to my orthopaedic shoes thank you very much). Instead of going
out, I made a delicious dinner, and we opened a bottle of Merlot, and to some
soft music I clung to my darling husband in a very very slow dance. I closed my
eyes in our embrace as I imagined for one moment that I was young and healthy, dancing
the night away at some grand ball.

For two weeks I have been doing Yoga breathing exercises,
and as little as this may sound, I can feel a slight improvement. I do these
exercises when I first get up in the morning as its peaceful and quiet, and
also last thing at night which is calming before preparing to sleep. If I get a chance during
the day, where ever I may be, I make use of the time and do these exercises.
I've got nothing to lose and everything to gain. I was given some very useful
tips, and although I knew these things, seeing them written down and explained
in a simple manner by a professional Yoga teacher, their importance was enhanced.
We've all heard a million times, "bend or hinge at the hips, not the waist"
but do we really practice what we know? "Keep a wide stance when standing
for steadiness" - again plainly obvious, but now I pay close attention to
how I stand. I can certainly see the benefits of learning Yoga, but I would
highly recommend that if you are a complete novice like myself, ensure you find
a qualified teacher who knows about Parkinson's.

This
week's article in The Huffington Post is entitled "Life Is Not Black &White" which
I was inspired to write and dedicate to a woman who has had a great affect
on my life, and is always there for me.